Living Life after your Transplant

Posted by Rosemary, Volunteer Mentor @rosemarya, Jul 4, 2016

I would like to ask you to share ideas about how you ‘live’ after your transplant. For example: hand washing and germ prevention, eating out; attending public events; daily medicine reminder……Practical living; not the medical things. I would like to share an idea for hand shakes.

I am 7 years out from my transplant and I have had some time to implement some healthy practices that work for me. I have also been fortunate to have the support and directives from my post transplant team at Mayo Clinic as well as working as a volunteer with my local organ donor association.
Last week I met a woman, a liver recipient, at an organ donor event. When we were introduced, she reached out to shake my hand. She was 9 years post transplant. She was both surprised and pleased that I did not extend my right hand to shake hers. Instead, I used the American Sign Language hand sigh for ‘Peace’ . She had been struggling for a long time with this awkward situation.

PEACE: Place the right flat hand on the left flat hand at chest level; then place the left on the right. Now move both flat hands down and to the sides with palms down. Pass from one position to another smoothly and continuously.

I hope this helps you as it helped her. Rosemary

@colleenyoung

Great idea @rosemarya to gather ideas of living post transplant. In the current social media lingo, these are called “life hacks” meaning that we re-think old practices like hackers rethink technology. Hacking in this sense is a good thing. I bet @bsox1901 @coastalgirl @sandras have some post-transplant life hacks to add.

For people who are more visual (like me), here is a video demonstration of American sign language for the work PEACE (aka Rosemary’s handshake) http://www.handspeak.com/word/search/index.php?id=1609

Jump to this post

I can’t believe I didn’t think to recall this life hack that has been very beneficial to me.
My donor was CMV positive and I was in the small group of adults that had not been exposed to CMV and therefore had no antibodies built up to help keep CMV at bay. The first year after transplant the virus reactivated full force 4 times requiring medication for 90 days each time.
I learned that a diet high in lysine and also taking super lysine daily of at least 1000 mg daily helps keep this virus under control as well as diminishing stress.
This has been of great assistance.
Wondering if any other transplant recipients have dealt with CMV issues and, if so, any tips you may have.

REPLY
@colleenyoung

Great idea @rosemarya to gather ideas of living post transplant. In the current social media lingo, these are called “life hacks” meaning that we re-think old practices like hackers rethink technology. Hacking in this sense is a good thing. I bet @bsox1901 @coastalgirl @sandras have some post-transplant life hacks to add.

For people who are more visual (like me), here is a video demonstration of American sign language for the work PEACE (aka Rosemary’s handshake) http://www.handspeak.com/word/search/index.php?id=1609

Jump to this post

Glad you remembered about this Coastalgirl.

For anyone reading this CMV stands for cytomegalovirus, a common virus that can infect almost anyone. Most people don’t know they have CMV because it rarely causes symptoms. However, if you’re pregnant or have a weakened immune system, CMV is cause for concern. Here’s more info http://www.mayoclinic.org/diseases-conditions/cmv/basics/definition/con-20029514

REPLY
@colleenyoung

Great idea @rosemarya to gather ideas of living post transplant. In the current social media lingo, these are called “life hacks” meaning that we re-think old practices like hackers rethink technology. Hacking in this sense is a good thing. I bet @bsox1901 @coastalgirl @sandras have some post-transplant life hacks to add.

For people who are more visual (like me), here is a video demonstration of American sign language for the work PEACE (aka Rosemary’s handshake) http://www.handspeak.com/word/search/index.php?id=1609

Jump to this post

I recently ran out of my super lysine and had become a little nonchalant since I had been doing so well and had a flare up which quickly shook me into reality!! We can never be too diligent in maintaining our regimens to keep ourselves healthy.
Symptoms of CMV are like so many other symptoms we may suffer from time to time it is good to he able to identify quickly.
Mine personally consists nighttime elevated temps, night sweats, swollen throat & glands, upset or achy stomach, mouth ulcers, severe fatigue.
Stay strong fellow recipients!!

REPLY
@dglass4040

@dglass4040
My transplant was due to AAT….. Alpha one anti trypsin disease . Inherited from my parents. This disease was isolated by the swedes in the 1960’s because young adults were contraction emphsema .
My mother was half Swedish and my father was half scotch ……. Orphan disease approx 100,000 people effected yearly ….. Primary symptoms do not really start until late twenties early thirties. You either need a lung or liver or both transplants …. Some need pancreas operations.
So, my sister was diagnosed at 38 and since died this past year at 67 and my brother 58 is about to have a liver transplant at UVAMED.
In October of 2010 I finished a Skyscraper in Nyc for the Rolex Watch company. Within 30 days of completion of this project my liver started failing . I had been followed
By the liver department of YALE Center of Digestive Diseases for 10 years and they were confident I would live a long life before I needed a transplant. By May of 2011 I had 14 ascities taps and had lost 60 lbs.
My visit to mayo Florida was suggested by my brother and my YALE ….Dr. Tamar Taddei.
By August 4 my Meld score had soared to 26 and I proceeded with a liver transplant by Surgeon Dana Perry.
Post transplant was very tough for a few weeks.

Later determined that I did not have a rejection but
My main hepatic artery was fully occluded or blocked
In the first 90 days …. My new liver formed new
Vessels or extensions to feed the liver and today I am rated low to failure . But, so far so good .
Life has been challenging…. In 2013 I had prostate cancer
With proton beam therapy, and now I am going to
Mayo Rochester for a 2nd prostate cancer operation.

Hand cleaning and staying away from crowds has
Giving me a cold free life for five years.
Washing food and making most of our meals has
Saved me from any food poisoning. Shaking hands
Is followed by quick hand cleaner. Movies are watched
At midweek at 1:00 pm matinees

Staying away from school kids , and a distance from all
3rd world travelers ( my nephews)

I am very happy to be alive and enjoy every day
Stress is to be forgotten.
Best to all
DGlass4040

Jump to this post

@swordfish, I want to invite you to read some of the helpful living hints that @dglass4040 has shared with us about remaining healthy after liver transplant. As I’ve told you before, I’m cheering for you. Rosemary

REPLY

Hi, All.
I want to suggest that you look at the new Connect Page on Living Donation! I know that we are already transplanted, but it is so-o-o very interesting. Amazing medical progress. And information is right there to read.

Really though, of interest is the accompanying blog. There is some great information from Mayo staff. One about avoiding flu. And another about “raw” foods.
I hope that you will find these, and more “life hacks” helpful!
Please continue to share any helpful hints that you learn about. And , of course, if you have any questions, ask them, too. We are in this together. And together we can support and learn from each other.
Rosemary

REPLY

Thank you for introducing the new Transplant Page, Rosemary.
We’ve just introduced Pages on Connect. They are blogs and information written by Mayo Clinic specialists and the transplant team was one of the first teams to publish their page. Are you surprised? No, neither am I. What a great team.

You can find the Transplant Page here: https://connect.mayoclinic.org/page/transplant/
Here is the Page directory: https://connect.mayoclinic.org/pages Keep you eye on it as we will be publishing more pages in the coming weeks.

Pop over to the Transplant page, leave a comment on one of the Newsfeed posts, and give us your feedback.

REPLY

Hi All
I want to share a reminder as we approach flu season, and holiday season.
This is a perfect time to double up on protecting yourself from all those yucky germs and infections that seem to surface this time of year. It’s also an ideal opportunity to reteach family, friends, co-workers, anyone with whom you associate regularly.
—Get flu shot.
——Wash those hands.
———– Avoid crowds.
—————–Cover that cough or sneeze.
Did I forget any?
—Feel free to add to this list.
Let us transplant recipients stay healthy together. We’ve come too far to let us (or our friends) become careless about our wellbeing.

Hugs and good health to all of you,
Rosemary

REPLY

Thank you, Rosemary, for that reminder. I certainly need to get that flu shot right away. Hope you are doing well and looking forward to the holidays:))
Happy Thanksgiving to you and all our fellow transplant recipients!!

REPLY

My risk-taking behavior has changed dramatically. I am much more aware of and watchful for dangers. Food has probably been the biggest issue for me. When eating out, which must happen when we travel, I often use extra napkins to lay my utensils upon. I watch the wait staff grab a cloth and walk around swiping at table after table. Is that cloth ever washed out? How much food debris do they miss? What about the food the toddler spilled or dropped on the seat? Did the previous customer wash their hands after toileting? How many germs did they bring to that table and where did they leave them? I never eat anything if it has fallen on the table or been touched by the server in my sight. I am most comfortable where they use a cleaning spray and then wipe the table and seats with either a clean towel or paper towels. I really dislike plates served with debris on the edges (which shows where the server’s thumb had been). Drink through a straw, you don’t know if/how well the glasses were washed. Have you ever gotten a glass of water that looked unclean? It is necessary to learn to ask for special treatment of your food. Restaurants in Rochester, MN were extremely helpful (because of the large amount of medical patients they serve) to us in learning what and how to ask. Many restaurants also now have their foods listed by specialty ingredients for different limiting diets. For example, I have 5 different limitations now and one place that is very helpful for me is Olive Garden. They will provide a list of foods including dairy, nuts, and other common dietary limitations. I am excited to read ideas from everyone else.

REPLY

.I understand what you are saying! @2011panc Thank you for sharing your dining out life hacks! It is sometimes a difficult thing for work buddies and associates to understand. But we do it for ourselves and to honor the donor who gave us a second chance at life. I, too have a couple of ‘safe eating zones’. I always keep hand sanitizer with me. And I use if after I touch menu, and after I might use a salt, pepper, or catsup bottle – which I seldom choose to do!
I am already beginning to think about those holiday buffets and parties. Anybody have any hacks that might be especially helpful and healthy for holiday festivities? Please share ideas, or questions.
Rosemary

REPLY

For buffets, potlucks, etc., unless you know who cooked what or the event is catered and you can observe food safety measures in place, I only eat things that are served steaming or frozen or have obviously been commercially prepared. I love when individually-wrapped servings are available. I often put a handful of hard candies (individually-wrapped, of course) in my pocket or purse and take my own travel mug along and drink a great deal of black coffee. Coffee is almost always universally available and helps curb my appetite. I also either eat something before I go or take my own food along. If there is a host, I speak with them privately and explain that I have dietary issues and don’t want to ruin their party by getting sick from eating something I shouldn’t. And finally . . . water. It is rare that I am without a water bottle. I prefer spring water, but will drink filtered water if it is available.

REPLY
@2011panc

For buffets, potlucks, etc., unless you know who cooked what or the event is catered and you can observe food safety measures in place, I only eat things that are served steaming or frozen or have obviously been commercially prepared. I love when individually-wrapped servings are available. I often put a handful of hard candies (individually-wrapped, of course) in my pocket or purse and take my own travel mug along and drink a great deal of black coffee. Coffee is almost always universally available and helps curb my appetite. I also either eat something before I go or take my own food along. If there is a host, I speak with them privately and explain that I have dietary issues and don’t want to ruin their party by getting sick from eating something I shouldn’t. And finally . . . water. It is rare that I am without a water bottle. I prefer spring water, but will drink filtered water if it is available.

Jump to this post

You and I must have had the same post transplant lessons in Rochester! Thank you for sharing this valuable information.
I’ve just had an experience that I want to share so that others can be aware. I saw some covered individual containers of fruit on my local hospital cafeteria where I am currently visiting someone. I almost bought one, until I learned that they were left overs from the morning breakfast bar. Yikes!!
We have to always be alert and focused for our safety.
Rosemary

REPLY
Please sign in or register to post a reply.